Problems getting back in the swing after breast cancer

Gaps in rehabilitative care



For more than 50 years, Cancer has explored every facet of malignant disease, including morphology, therapy, epidemiology, biology, historical perspective, and basic science. However, the Editors of Cancer believe that the human beings who bear the burden of this illness have much to teach us, and we now solicit essays from patients and family members about their experience. Cancer 2006. © 2006 American Cancer Society.

“… his patients should be his book, they will never mislead him.”

Paracelsus, 1493–1541 Book of Tartaric Diseases

What about golf? That's probably an unusual question for a newly diagnosed breast cancer patient to consider, but it was one of my concerns. So many questions tumbled through my mind that March day in 2002 when I received the call with the biopsy results.Would I survive? What about my family and my job as a pediatrician? Would I lose my hair? Could I still play golf?

As a physician, I knew my tumor carried a good prognosis–it was small, a 6-mm, Grade 2 infiltrating ductal carcinoma. A segmental mastectomy and a sentinel lymph node biopsy were scheduled. Although the diagnosis was terrifying, I felt lucky that the cancer was detected early and was optimistic there would be few problems. The initial surgical pathology report was negative but on review a questionable micrometastasis was found in the sentinel lymph node. Reluctantly, I agreed to axillary lymph node dissection based on the strong recommendation of my surgeon. After these surgeries, I did have numerous complications—a few in the acute period but other problems months and even years later. Because of these complications, I had difficulty caring for my family and working as a pediatrician and for a while I feared golfing again might be impossible.

I was aware of the complications of breast cancer treatment. But I did not anticipate the lack of guidance I received when attempting to ameliorate the side effects of my treatment. Other cancer survivors experience the same difficulty. In November 2005, the Institute of Medicine (IOM) issued a report entitled “From Cancer Patient to Cancer Survivor: Lost in Transition,” exploring the gap in follow-up care for cancer survivors once active treatment ends. Problems encountered in survivorship, as outlined in the IOM statement, include appropriate medical follow-up, difficulties with occupational issues, and quality-of-life issues. While struggling to overcome multiple problems after my breast cancer treatment, I did feel lost in transition.

On a flight from Pittsburgh to Houston 3 weeks after my breast surgery, I experienced the most frightening complication. During the flight, my breast swelled and the incision separated, oozing lymph fluid. This was most likely lymphedema caused by cabin pressure changes. The incision healed, but shortly afterward the scar contracted and adhesions formed below my axilla. I was unable to fully rotate my shoulder and after radiation therapy movement was even more restricted. Six months after surgery, despite stretching exercises, I had developed a partially frozen shoulder.

In physical therapy, I worked diligently to regain mobility in my arm. Over time, things improved, but I still had limited rotation. I could not swing a golf club as I did before surgery. In December of that year, I contacted my surgeon for guidance. The surgeon did not want to see me because he had no other suggestions. Feeling isolated, I sought the help of a friend, a physician at another large cancer center. He referred me to a plastic surgeon who treated the adhesions with steroid injections.After several injections, scar massage, and more physical therapy, I was able at last to move my arm completely.

By the spring of 2003, my shoulder moved freely, but I was plagued by persistent neuropathic pain in my axilla and upper arm. I had never realized how physically demanding being a pediatrician was until that year. Lifting and restraining children only added to the discomfort. I took frequent doses of nonnarcotic pain medication so I could work and care for my family. Despairing, I contacted my surgeon again for advice on pain management. His nurse returned my call and sympathized with me. She had undergone the same surgery 7 years earlier and still had discomfort. But the surgeon did not have any recommendations other than acetaminophen and antiinflammatories. Through a neurologist friend, I learned about gabapentin, which thankfully reduced the discomfort. That summer was wonderful. I had regained my strength and mobility and was relatively pain free. I could golf again–my problems seemed to be over.

But in the fall of 2004 (now more than 2 years since my surgery), I experienced more pain and restricted movement of my arm. A pain specialist doubled my dose of gabapentin and referred me back to physical therapy. Physical therapy helped, but the pain persisted so a transcutaneous electrical nerve stimulation (TENS) unit was prescribed. I was discouraged and losing ground. I sought the help of a physiatrist at a major breast cancer center. She examined me and quickly diagnosed a rotator cuff abnormality, which was later confirmed by magnetic resonance imaging. With appropriate treatment, my arm improved. The golf season of 2005 was one of my best. My swing finally returned!

For me, the most challenging aspect of cancer treatment was finding help with rehabilitation. Despite the known arm morbidity of axillary lymph node dissection, the problems are addressed only rarely. My complications–adhesions, pain, and rotator cuff dysfunction–are not uncommon, yet there was not a channel for helping me to resolve these issues other than referral to physical therapy. Follow-up visits tended to focus on questions regarding medications, mammograms, and gynecologic history and not quality-of-life issues. The goal of breast cancer treatment should be both to cure cancer and return the patient as closely as possible to the life she had before the diagnosis.

How could I have received the help I needed? What should change? Treatment doctors should prioritize rehabilitation of the cancer patient. So much effort is focused on early detection and cure and very little on recovery after the immediate postoperative period. Three brief questions could quickly provide the doctor with necessary information about the patient's recovery. “Are you able to do activities you did before your diagnosis? Are you in much pain? Can we help you?” The surgeon does not need to be an expert in rehabilitation but could develop relationships with other specialists who could be used for referrals. For example, a physiatrist, a pain specialist, and orthopedist familiar with the complications of breast cancer treatment could facilitate recovery for patients.

Breast cancer patients should be taught to be self-advocates, to learn what problems are to be expected and what problems are not typical. A pamphlet telling the patient when to contact the treatment doctor would be a beneficial tool. Partnership between the patient and physician should persist from the time of the dreaded diagnosis of cancer through treatment to optimal recovery.

I love golf even though I have a high handicap. Still, over the years, I have made some good shots and won my share of prizes, and that keeps me coming back. Many golfers consider the game a metaphor for life. When I reflect on my experience with cancer, the course played long. I landed in several sand traps and did not have the equipment or the expertise to get out. Luckily, I eventually found the help I needed. In golf, the drives and fairways shots are exciting and critical for a good game, but in the end, it is the short game, the chips and putts, that get the ball to the cup. In cancer treatment, surgery, radiation, and adjuvant treatment will cure the patient's disease. But it is rehabilitation that will get you back in the swing. And sometimes the swing can be even better than before.